Why professionals should look out for ' not obvious' Aspergers.

 

I have a diagnosis of Aspergers, which was given to me four years ago by a multi-disciplinary team of professionals, but only after I instigated the process.

At school, I was labelled an ''enigmatic'' child because no one really understood me. An educational psychologist assessed me when I was in year 6, and recommended that I should receive a statement of SEN straight away. The school dragged their heels and did nothing. No reason for my difficulties was given, other than that I was 'emotionally and physically immature' (taken from the Ed psych report, that is still in my possession).

I am not an'obvious' case. I do engage with people, my voice is not monotonous, I don't look at the ground as I speak, or display any obvious autistic behaviours. I certainly do display autistic behaviours, it is just I am very good at covering them up when I am in public. I am articulate and self-aware- too self-aware, in fact. Therefore, people easily labelled me as 'shy', 'troublesome', 'obnoxious', a 'slow learner' etc. But despite not being 'obvious', I am really affected by my Aspergers. It causes chronic anxiety, a feeling of being on edge all the time, environmental overload, problems understanding the intentioms of other people, obsessive compulsive behaviours.

What worries me is that less 'obvious' cases fall through the cracks, while the person with the undiagnosed condition develops serious problems that prevent them from holding down employment, making sense of their world, and risking serious mental health problems. You should never judge a book by its cover, as the saying goes, and someone who appears to be coping, and does not seem autistic at first glance, may well have serious disabling issues. It is  not good enough to say that someone's problem was missed because they did not come across as ''obvious'. Professionals need to look out for the less obvious cases, who are often struggling the most, or certainly no less than the more typical presentations.

Parents
  • Re "falling through the cracks" I do feel strongly that the biggest issue with those who are abler, better able to cope in the world, is our experiences are not taken into account.

    I understand the emphasis in research and clinical contexts is about finding a cure. However so little is done to research ways of improving quality of life meantime.

    A lot of clinical experience is with people with comorbid conditions or more extreme symptoms - OCD, depression, environmental distress etc.

    This gives perhaps a misleading understanding of the key difficulties faced by people on the spectrum, that are due to the spectrum and nothing else.

    The logical people to interview, observe and study might be those primarily affected by spectrum issues rather than additional problems.  People more able or coping better might be better able to inform clinicians and researchers about the problems faced by people on the spectrum.

    But those are the people who "fall through the cracks", who aren't consulted, aren't considered able to contribute anything.

    It needs a new perspective. Look at how people, whether abler or more severely affected cope with everyday life and use that knowledge to inform understanding and solutions to finding a cure. Seems logical to me - but I cannot find any clinicians or researchers who think that way.

    Sorry, been off air for a while during a move to another part of the country. Strangely I've found myself in another local authority that hasn't bothered to set up an autism partnership board.

Reply
  • Re "falling through the cracks" I do feel strongly that the biggest issue with those who are abler, better able to cope in the world, is our experiences are not taken into account.

    I understand the emphasis in research and clinical contexts is about finding a cure. However so little is done to research ways of improving quality of life meantime.

    A lot of clinical experience is with people with comorbid conditions or more extreme symptoms - OCD, depression, environmental distress etc.

    This gives perhaps a misleading understanding of the key difficulties faced by people on the spectrum, that are due to the spectrum and nothing else.

    The logical people to interview, observe and study might be those primarily affected by spectrum issues rather than additional problems.  People more able or coping better might be better able to inform clinicians and researchers about the problems faced by people on the spectrum.

    But those are the people who "fall through the cracks", who aren't consulted, aren't considered able to contribute anything.

    It needs a new perspective. Look at how people, whether abler or more severely affected cope with everyday life and use that knowledge to inform understanding and solutions to finding a cure. Seems logical to me - but I cannot find any clinicians or researchers who think that way.

    Sorry, been off air for a while during a move to another part of the country. Strangely I've found myself in another local authority that hasn't bothered to set up an autism partnership board.

Children
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